Hi there, I hope someone can help here. My pain started initially with my feet as burning feet and then a lot of pain in different areas of the feet. That was 2 years ago.. My gp did some test and they only found that my LDL Colesterol was raised and deficiency of vitamin D. I was referred to neurology. I had a MRI to my back and an EMG nerve conducted test and came back all fine. I have been discharged with Clonazepam. I had changed all my shoes to skechers as I cannot walk on my feet anymore and l lost 6 kg as I thought this will help but no change.
I did 6 month of physiotherapy but that did not help me at all. Then I start feeling really tired and needed a nap during the day to feel better. The nap helped a lot with my pain. I was going like this for 2 years. I had vit d spray 3k for 3 months then a break.
Now I went abroad in my country as nothing seems to help anymore.
I had some blood test 05/12/22 but I only post the one relevant to thyroid.
Vitamin B12 total 449.2 range 197-771
Folic Acid 5.61 range 2.7 -16.1
Private Medichecks test reveals folates deficiency just a week before December 22.
06/12/22 blood test done at 12.24 but I had not eaten
TSH 1.99 range 0.27-4.2
FT4 15.6 range 12-22
Iron 24.3 range 15 - 150
Vitamin B1 90.9 range 20-85
Vitamin B6 33.8 range 8.7-27.2
Colesterol LDL 127 range optimum to limit 100-129
Alanaminotranferaza(GPT) 43.7 range <33
Vitamin B12 active 73 range 251-165
08/11/22
Vitamin D 12.5 range <20 deficiency
Folates 4.9 range 4.6-34.8
16/01/23
Alaninaminotransferaza 52.5 range <33
Gama glutamitransfera 100 range <40
Colesterol LDL 185 range raised 160-189
17/01/23 time 7 .15 am
Ft4 15 range 12-22
TSH 4.98 range 0.27- 4.2
Hope is all clear ..I had a bone density test that came back as osteopeny and a endoscopy and biopsy that reveal a gluten intolerance. I am already lactose intolerant.
Apart of my feet pain and feeling tired at all times I know developed eyelid eczema that now is worse than ever before plus muscleand bone pain. The sleep doesn't help my pain level anymore on my feet like before.
Endoscopy was done as I start having digestive problems most of the times.
I am now in gluten and lactose diet and have an appointment abroad as the tests done in UK came back in range for thyroid so therefore nothing they can do.
The diet seems that doesn't make a lot of difference only perhaps with my digestive issues.
The tests apart from.last one were done later so no early morning but I have not eaten before or take any vitamins specially Bs. I am now really down and afraid that I won't get a tratament because of my previous Tsh good levels.
I have purchased a private kit from monitor my health and will do that on Monday early morning and send next day delivery to see the levels. I purchased a thyroid health check.
Any advice how to treat my eczema. Is not flaky but my eyes are really swollen. I have change all face regime to eczema friendly routine.
Thank you for having patience to read this.
Ps.The day I did my blood test in UK was early as 8.30 but I forgot and eaten that morning
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Thyroid bloods should be done fasting as close to 9am as possible as this is when TSH is highest. It looks as if your thyroid is struggling, particularly on the last test. To get an NHS diagnosis you need 2 consecutive tests with TSH over 5.
Are you taking any supplements? I see your B6 is over range. B6 in excess can cause toxicity and nasty nerve symptoms.
Your folate and D3 are low so you should be supplementing them.
Only vitamin D, and sometimes I take B12 as a spray when I feel really tired. I never took complex B as I cannot not tolerate supplements. Vitamin D same as a spray I did took it long times since 2021 but seems by my blood tests that make little to no difference. Is worse than before. Thank you. Ps. I did asked my Dr about vit B 6 as I don't take any supplements and it seems that they don't know why is exces. I don't eat procces food and cook 99% of the time. Only thing is wholegrain cereals but I look over for that vitamin and it couldn't just by eating cereals lead to that toxic level.
This article I read talks about high level of certain B vits being linked to the MTHFR gene which is not uncommon. If you have an inbalace of B vits then some of them can float around and not get to cells. easy-immune-health.com/vita...
I would recommend working on your folate level as that is definitely MTHFR linked. Get it to around 20.
Thank you, Jaydee. I had a proper read onto this article. I will do this gene test as is cheaper abroad to put my mind at rest. Overall I couldn't be vitamin toxic as I never take vitamins și is definitely related to something else. I order folates 400mg I think is that enough?
Your body will probably tell you when you've had enough but do test every 3 months or so. The cheapest way to do a gene test is to do 23 & Me or Ancestry DNA, download your results then upload to an analysis site.
I am guessing that your free T3 is low. Have you ever had it tested? Ask your GP to do it along with T4 and TSH and you will probably find a low free T3. If I am right, a higher dose of Levothyroxine might help or you might need the addition of Liothyronine (if you are not converting your Levothyroxine well). The first step, however, is to find out your T3 result with the reference range and post it here. Once your T3 is established and raised to a good level, I think you will find your other strange symptoms start to disappear. I am speaking from experience of struggling with a low T3 and high T4 for many years before I discovered the existence of Liothyronine and managed to get my GP to supply it.
Hi! I don't know if this is any help.But my feet starting burning,numbness, pain in August. All blood work normal.4 MRIs normal. I'm going to make an appt with a neurologist.I just don't know if I can go through with nerve conduction study or EMG from what people tell me ..the pain is bad.Anyway, I'm thinking it all might be related to either the Covid vaccine or Covid itself. Just a different perspective. It's all frustrating and scary!
Blood test can come normal depends what test they required. I had to see various Dr s abroad and had 10 pages report for all sort of blood tests. Second neurolog asked for B1,B6,B12 active along with MRI for both feet and send me to see a rheumatologist to have more blood tests. I felt in my heart that is not over and covid wise mine started just when everything started. For some time I thought is that but something didn't make sense. I had the feeling that Dr sometimes are clueless although abroad they requested lots of tests before making a decision. I did sense at all times that no-one knows your body like you do and the best Dr is yourself.
As I have already order a test from monitor my health that doesn't include both antibodies but I will do on mid February a full test on the above and again on folate,Ferritin, vitamin D and 12.
I did not know folate is different than acid folic. Already order with acid folic. I will read what you sent me.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Hi ,yes is for ferritin results.I have always been anaemic on my blood tests and tried different version of iron before dropping them off due to digestive issues.
Yes no iron results now. In the past I had many times done a ful panels into and be told I have iron deficiency.I will redo the tests again soon.I don't have liver every week but now is time.
Also, as you cook a lot, if your stove can cope with it, get a cast iron pan and cook regularly in it. They are heavy, but they add tiny amounts of iron to the food you cook in them. There is also something called a "lucky fish" I think, or an iron fish anyway, that you can put in your pans of boiling water for cooking and receive small amounts of iron from. They are available from Amazon. I use a cast iron pan, I haven't yet tried the fish.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins)
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
I am not taking anything nor ever taking any mediationfor thyroidor otherwise. I had ordered the B complex, but after the first pill, I was so sick. I forgot to say I don't tolerate pills generally in special vitamins.i had ordered the B complex you suggested from Amazon and vit D and K in oily drops. I can not tolerate either of them. My head was in so much pain, and it was numb like I had never felt before. However, I was able to eat liver and bought a Dutch pot made of iron.. I wish I could, but apart of spray from better me of Vit D and iron, there isn't pretty much I can do. I had a multi complex as a spray and same i was really sick from. I normally tolerate sintetic pills as I was taking Clonazepam for long time and before I did take Gabapentin but me and vitamins is a no no. I have to fund different alternatives to overcome this.Thank you
Ps. What is that message that the patter is usual?
Hi,I have already from some time ago Vit B12 as a spray and I am fine from no sickness. I will give it a go for folic acid separately to see how it is. Thank you. I am not as bad on vit B12 but had taken the spray for a while. Looks like all the blood test on vit B12 are OK middle range but I hope to find something for folate that I can tolerate. Thanks
Suggest you test for the DIO2 genetic mutation which indicates lack of conversion of T4 to T3. Available in the UK through Regenerus Laboratories in Redhill and elsewhere. If you have the mutation the result will provide evidence for taking T3.
When I started levothyroxine, they put me on 100mg. Within a few weeks I had leg and feet pain. After discussion we cut it in half to 50mg. Pain subsided for a few weeks, then built up and my feet were excrutiatingly painful. So cut in half again to 25 mg (what the instructions actually say you should start on) but the GPs/NICE say is not high enough! Pain went. Over time, its slowly been increased when my body could cope. Now on 75/50mg during the week. Still not on the 100mg initially prescribed. No idea if relevant to you, but I had burning feet and it was due to the levothyroxine in my case.
What I mean is I now take 75 mg for 4 days and 50 mg 3 days. but this was all added on very slowly from 25mg. Just banging me on 100mg to start with was ridiculous and caused a lot of pain.
Burning feet is dehydration and alot of salt or toxins in the feet that isn't get put out thru the kidneys due to lack of water in the body . You need to drink alot of water they say 2 liters a day maybe a little more . I have been drinking bottled water and I add my own fresh lemon to it to cleanse the kidneys .
That don't have nothing to do with the pain you are using in yr feet. I have hypothyroidism and I'm on 50 mcg of levothyroxine and it does nothing to the feet.
You have ALOT going on with yr like potassium your Vitamin B's all that . Something is depleting all the nutrients and vitamins out of yr body . I have been doing alot of my own research since 2014 and still reading up on certain things with the body as in feet lower leg, kidneys , pancreas, abdomen and alot of man made allergies .
I had terrible eczema around my eyes as part of the symptoms of untreated hypothyroidism.
Looking at your test results your vitD is far too low, a daily maintenance dose would be 5,000 in the winter and 3000 in the summer, for the uk weather ,so you aren’t taking enough to build up your levels only maintain the low level. Unless you are able to get out into strong sunshine regularly with skin exposed, you need to increase the dose of d3. It can take a long time to build up the levels within the body.
Vit D helps with skin issues, including eczema and psoriasis, which is why these conditions often improve during the summer, when we are able to build up vit D levels naturally.
With digestive issues generally we can become depleted of vitamins and minerals and low thyroid leads to digestive issues as the body doesn’t produce enough HCL to break the food down to enable digestion and weinitially get heartburn etc which lead to deficiencies of vits and mins in the body. This is all treatable bur your average gp or endo don’t really understand the process and how important good vit and min levels are for health.
I would suggest that you have to educate yourself, as most doctors, in my experience, are clueless about thyroid and nutrition. A good starting point is Dr Peatfield’s book ‘Your thyroid and how to keep it healthy’.
Unfortunately there isn’t a quick fix with thyroid issues but a slow process of correcting deficiencies and working out what your body needs, a lot of which is solo detective work, imo.
Hi,Thank you for the book. I will definitely buy it. I had used the calculator for levels of D3 , and it seems that I need 7k for 3 month to build up and then maintain. This eyelid eczema drives me mad. I thought I put it to sleep but lately is out of control.Never been this worse but I never feel this bad and tired so this explains all. I am new to this as been fighting for over 2 years with my GP. Only because I did my blood test abroad I was able to find out so many answers and find out about thyroid. There is compulsory not to eat before any test and adviceble early morning.Now that I went on the website lab I did my test specify on thyroid test that is best early morning after a long fast and the interference with biotin and other medication. Like you said I need to educate myself and this is where my journey starts.Thank you for all of you who post and help is been great to find so much intelligence on this subject.
Good for you, self education is very important, and can give us the confidence to push forward. Another book I have found very useful generally is ‘Doctor yourself’ by Dr Andrew Saul, who has found that by dealing with vit and min deficiencies many illnesses are healed, he has a very good website too doctoryourself.com. Another doctor to look at is Dr Sarah Myhill, she isn’t taking on new patients but puts all her information and findings out on her wiki page and in her books and she updates her info pages as she makes new findings. Like Dr Saul and Dr Peatfield she believes that we should have knowledge and information available to us.
What do you mean by “endoscopy and biopsy that reveal a gluten intolerance”? The biopsy is done to see if one has Celiac (to see if the villi are damaged). Are you saying you have Celiac or that by eliminating Celiac you and you doctor determined you must have NCGS (Non-celiac gluten sensitivity)? My gastroenterologist and I agree that I have NCGS and I, too, eat a gluten-free diet. As far as I know there is no test to 100% confirm NCGS.
Also, I read somewhere that some ppl with Celiac disease become lactose intolerant because their villi are damaged from eating gluten and when they stop eating gluten and their gut heals, they might be able to tolerate dairy again.
If you have Celiac and are accidentally eating even trace amounts of gluten that may be the issue. You should take a look at this celiac.org/about-celiac-dis...
Among other things it states, “It is estimated that up to 50% of celiac disease patients have persistent symptoms while on the gluten-free diet.1 The most common reason for persistent symptoms is continuing to ingest gluten” and “Refractory celiac disease, also known as refractory sprue, affects up to 5% of patients.For these patients, the damaged villi in the small intestine do not heal from a gluten-free diet, and all other potential causes for this damage have been ruled out.These patients are usually treated with steroids and immunosuppressants.”
You mentioned you were diagnosed w/ osteopenia. I have osteoporosis. Be aware that long term steroid use can can bone loss (meaning this because patients with refractory Celiac disease are often treated w/ steroids).
I had endoscopy for having diarrhoea too often and pain in upper abdomen.In our country the biopsy is included irelevant wherever you have something or not. Is included in the price. That reveal vili damaged. Is the celiac disease sorry I referred as gluten intolerance. There are markers that can help establish the disease before biopsy but I had the biopsy before the blood tests. Blood test didn't reveal anything anyway but 3 weeks later I had results back. Lactose intolerance I have if now for years. Thank you for info
My feet symptoms were very similar. Are you having B12 injections? If I read your BT results correctly your B12 level is very low which goes with neuropathic pain. These injections were the biggest help for me. I still have them 3 monthly years later.
No,I was under impression that my B12 is fine. Active B12 is 449 and B12 total is 73 so I thought is kinda OK although can be more. I have a vit B12 spray but I did thought about injection. Where are you doing yours? Thanks
I believe the range was revised to 500 - 1300. However, it looks as if you're not too far under. I only mention it because in my case (this was some years ago) it wasn’t noticed for some time resulting in nerve damage in my feet. I started with 1 injection per fortnight which corrected my level, now 3 monthly. I have the injections at my GP. Your feet pain sounds eerily similar.
They wouldn't consider that as seems in the range. I did wanted to test it anyway to see if I have any difference in my pain level that keeps me awake at night. This is so frustrating as no relief from GP of any kind. Even for the latest blood test I had to fight . Thank you for insight any information is helpful.
Mackanzie - in your original post above it says ..
B12 active = 73 ? If so, i believe that is very low B12 active result..? and on the B12 Deficiency site on Health Unlocked, many people have to load with B12 injections - as the sprays dont touch the deficiency.
I have the burning and painful feet and I am checking on B12 situation and Thyroid situation muself. Same as you started two years ago.
Its easy to get confused! I do all the time when tired. I hope the advice you have had on iron and getting the right mix of Vits helps you MacKanzie. K 🌼
I had great advice here. Now I need to find the products that I can tolerate. And more important is too find a Dr who can listen. Seems that symptoms don't matter anymore we all numbers. I feel so lost.
Sending my best wishes and support to you Mackansie. It's so difficult to keep focused and positive when your health is on its own rollercoaster. From the above it looks like you are likely still having some absorption issues? So, getting that mix of Vits and nutrients for yourself would seem a good focus ? It's a positive step for you? But I do get you. I hear you.
And it's natural to feel lost amongst it all. I get overwhelmed myself as things worsen and my fears rise. But I see that fear working against me. So, I try to focus on the positives as best you can. Build some time in to rest and "regroup" yourself. 🌻♥️
I am all positive but this Dr's drive me crazy here. I have faith in my system back home that will get treatment regardless.The difficult part is to fly for blood test and prescription every so often with 2 kids and a job I am trying my best not to loose. Thank you for nice words. Xx
Hi - I haven’t read all of the replies yet, so I apologize if I’m repeating anything someone else already mentioned. What initially caught my attention about your post is the burning sensation of your feet. I had the same symptoms beginning a few years ago and my A1c level for blood sugar was elevated. My Internist said it was diabetic neuropathy - nerve pain because of elevated blood sugar. She prescribed Gabapention which I continue to take. The Gabapentin has eased the pain. Over the years as I have managed to lower my A1c to a pre-diabetic level I’ve been able to reduce the dose of Gabapentin that I used to take, butt I still take Gabapentin daily. Is it possible your blood sugar is elevated and is causing the burning in the feet? Good luck!
No it is not that it has been checked and I had taken Gabapentin for a long time and then Clonazepam that could have ease the pain if so but thanks for trying to help.
I had big problems with burning feet for decades. It disappeared when I raised my Free T3 levels.
Optimising your basic nutrients (Vitamin D3, Vitamin B12, Folate, Ferritin (iron stores)) should help your conversion from T4 to T3. But if that doesn't improve your Free T3 you would probably need to take T3 in addition to T4 (Levo). Getting it prescribed in the UK is very difficult.
Alternatively, you might get on well with NDT - but it is getting harder and harder to get hold of it now. It seems to be a worldwide problem.
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